child – Page 8 – Hana's Heart

Out Of The OR

Posted on December 7, 2015 by katmeander

Hana is back in her room in the CVICU. The doctors and nurses are still settling her in but we did go into her room for a little while. It’s a little hard to see the thumping of her chest, which looks mechanical. For me that feels the hardest – not the three chest tubes and this pump holding her blood that comes out of her chest. Hana is doing well.

The surgeon talked to us after the surgery. He said things went well. Her heart has already reduced in size. They tried to reinflate her left lung but they were not able to. This was not really surprising since her left lung has been collapsed for so long.

While Hana was in surgery they put in a larger (diameter) breathing tube. They put in a central line in her neck and another arterial line in the groin area. They pulled her NG tube. Hana is on a lot of medications they added epinephrine, nipride, and a few others, she is getting Nitric oxide and a blood transfusion. Her blood pressure is a little high. It will take some tinkering to get everything just right. The biggest concern is to just watch the right side of the heart – to make sure it doesn’t get overworked and to watch her bleeding.

I am relieved the surgery is over. I wish there were less concerns right now because I am exhausted and would love to sleep. Actually they said tonight would be a good night to get sleep, while Hana is still very sedated. They always say stuff like that. I didn’t listen much to that advice the last time, in February, I just thought they were crazy and just didn’t understand what it was like to go through something like this. And probably they don’t know, but they have witnessed a lot of people go through it. They were right. As Hana’s heart failure/transplant cardiologist said to me Friday, “This is not a sprint, it’s a marathon.”

When I went in next to Hana, I put my hand on her head and stood in awe. I told her she was amazing. It is amazing to me how much she has gone through, I don’t even know how to put it into words.

Good Vibes

Posted on September 26, 2015September 26, 2015 by katmeander

I’ve been too tired to write updates! I’ve been falling asleep while breast pumping, something I didn’t think was possible. But there has been a lot going on.

First, Hana saw the GI doctor and dietitian. From that they decided she should start on some pediatric formula since her nutritional needs have outgrown the infant formula now that she is over a year old. We also scheduled some weight checks. A few days later six cases of Pediasure arrived. This stuff smells disgusting. It is made to be very sweet so that it entices kids to drink it, but it really turns my stomach. I slowly started adding it to Hana’s feeds, mixed with the regular fortified breast milk. I started with 25% and a couple days later went to 30% and a couple days later up to 35%. That’s when Hana started vomiting.

I ordered a can of an alternative to Pediasure, called Pediasmart. It only comes in powdered form, whereas Pediasure comes as a canned liquid (it also comes in a powder). I swapped out the Pediasure for Pediasmart and the vomiting stopped. Then we had to scramble to find more, this stuff is not easy to find in a retail store! We eventually ran out of Pediasmart so I substituted Pediasure back in for one night and she vomited alot, so that’s the end of me attempting to give Hana Pediasure. The next day (Monday) our amazing GI nurse proactively anticipated that we would run out of the formula before the supply she ordered for us arrived. She called all over the city trying to find some, talked to colleagues and the Pediasmart rep and she dug up a can of chocolate Pediasmart for us!

Hana had a weight check on the same scale as her last weight check and she gained 130 grams over 18 days. That’s 7 grams a day, which I think is pretty okay. They did say that kids’ weight gain generally slows to 3 or 4 grams a day after they turn a year.

Feeding by mouth has been going terrible. I should say, there has been no progress whatsoever. Our feeding specialist talked about getting Hana into a feeding program, one where they come to the house. At first I was excited but then I wasn’t sure if I liked the idea. I’ve heard mixed things about the feeding program that we would be referred to. I’ve been thinking about this feeding stuff a lot. It consumes my brain power. After much deliberation I decided that I think Hana just needs more time. I feel pretty confident about that. I think her brain is at work figuring out the world (including learning to walk) and even though we don’t see progress in her eating, I think things are at work inside her head.

Of course, I still want to give her opportunities to show us she can eat and drink, but I can’t be stressed about it. Or anxious. Or have expectations. She will do it when she is ready. So, I plug along, packing snacks and milk for her milk bear. I’ve mostly given up trying to have her “eat” while sitting in her high chair. I try offering food while we are out and about – at the park, in the stroller, at the playground. But mostly she is not interested, or she just wants to throw it on the floor.

Then on Sunday it got really hot in San Francisco. It was over 90 degrees! I made sure to offer Hana lots of cold breast milk. She drank and drank. She drank 380 mL, that’s almost 13 ounces. Then she did it the next day too! The day after that it cooled back down to our normal 65 degree weather and she drank 300 mL (10 ounces). The next day I tried adding some Pediasmart to the milk and her drinking slowed significantly, but she still drank more than 180 mL (6 ounces) which is more than she has consistently been drinking. I went back to straight breast milk the next day and she drank 290 mL and then 360 mL yesterday. I know that eventually she needs to eat or drink something more high calorie, but for now I want to see if she will consistently drink that volume.

At our feeding appointment this past week we went at a new time – in the morning, versus lunchtime. Hana “ate” a lot more yogurt than she has lately. She also tried some apple flavored crunchy snacks. She did this for an hour before she wanted to be done. It was great progress! Some things to note – she is perhaps still experiencing some reflux, she seems to be constipated and gassy from the new pediatric formula and she drank some milk so fast that she threw up. I think its because some went down the wrong tube and she coughed and threw up rather than her stomach bothering her. But either way our feeding specialist is going to discuss all these issues with the GI doctor and dietitian.

We have been getting out a lot more. I think it is good for Hana to be out, she seems to really thrive when she does. Its actually quite amazing. We go to the California Academy of Sciences every Tuesday morning. We go to the pool once a week and music class twice a week (to help stimulate her speech development). We go to the playground almost every day and she watches the other kids and climbs things. She loves to climb!

Recently Hana was mentioned in an online article about rare diseases for Children’s Cardiomyopathy Awareness Month (which is September):
https://rarediseases.org/hope-for-kids-with-heart-disease-september-is-childrens-cardiomyopathy-awareness-month/

Hana turned 13-months on Saturday and she also took her first steps! I’m hoping that once she really starts to walk that she will want to shift her focus more on learning to really eat.

There is nothing new to report about her heart. She wore an EKG holter for 24 hours which they said she would need to do twice a year. Everything came back normal. When she takes a long nap, two hours or more (she has never napped longer than 2 hours and fifteen minutes except in the days right before she ended up in the hospital) I get anxious. Yesterday was one of those days. Is she napping so long because of her heart? I can spiral out of control very quickly. I’ve been working on some things to help ease that anxiety. Hana does not need anxious vibes right now (or ever, really). She needs good vibes! Calm, relaxed, nurturing, positive vibes. We hung up a homemade tree in the house for Hana’s birthday party. It is still up! We cut out dozens and dozens of paper leaves for the tree and asked people to write well wishes (or bring their own “leaf” to add to the tree) for Hana. I’ve been starting to add my own good vibe, well wishes to the tree. It is a good practice for calming my anxiety!

If anyone would like to add a leaf to the tree, let me know. I can send you a leaf or you can make your own and send it!

Losing Weight?

Posted on September 2, 2015September 2, 2015 by katmeander

There has been a lot going on and much of it I wish I had made time to give it the recognition that I think it deserves, but its has just been too crazy. First, we had Hana’s big birthday celebration and it was wonderful! We had amazing food, amazing decorations (more on this later…) and amazing guests! Second, Hana and I flew to Bend, Oregon for our first trip after being discharged from Stanford. We were very nervous to have Hana fly and for her to be so far away from our usual medical facilities in case something went wrong. She handled the airplane ride just fine. There were no complications other than the usual difficulties of traveling with a one-year old – she didn’t sleep very well, naps and bedtime were harder, she might have felt overwhelmed by the new environment. She did vomit more – at least every day, which brings me to the next point.

We saw Hana’s Kaiser cardiologist on Monday and she has lost weight (130 grams or 4.5 ounces) from the week before. Now, when she saw her pediatrician the week before she was weighed on a different type of scale (a real scale versus a digital scale) and the nurse did it very, very quickly, maybe not so accurately because she is not used to parents who are tracking every ounce (or gram) so carefully. But lets say the reading was way off, still, her weight is just barely more than her weight at Stanford three and half weeks ago, its really the same. Her Kaiser cardiologist said she does not get worked up over one “bad” data point, such as this drop in weight.

In addition, Hana had an echocardiagram by the usual tech at Kaiser, Doug, who also did Hana’s very first echo, while her cardiologist looked and watched and we saw how bad her heart was for the first time. On Monday, Hana was Doug’s very last patient of his career. After 30 years he was retiring, so that was kind of an honor for us (and sad because he is really, really amazing). Regarding her echo, her Kaiser cardiologist said, “there isn’t anything significant” to talk about, but her heart is larger than it has been, so that is a change. She did say, “sometimes that happens”. This made my own heart plummet. I will say that her Kaiser cardiologist has seemed much more worried or concerned than the heart failure/transplant cardiologists at Stanford and she did not seem worried or concerned, but still, I was hoping her heart was getting smaller not larger.

Lastly, during her exam, her cardiologist thought she saw “pulling” of her skin between her ribs, as if she were having to work hard to breathe. She also said this could be because she had just been upset the minute before. But still! That is three things! I walked home from the appointments in a teary daze. Everything feels so fragile. I tell myself to take a deep breath, she looks so good, she is acting so much happier, she is talking so much more! Maybe her stagnant weight is because she is moving around so much more! I hope so. But still, it has been a little bit stressful and I am reminding myself to not take for granted the days and moments and all the good things. I remind myself not to make it something it isn’t. I remind myself to imagine what life will be like when all these things are no longer a worry. I remind myself to cherish my sweet girl!

GI Recheck

Posted on May 20, 2015 by katmeander

Yesterday was kind of crazy. Hana vomited three, technically four times. She napped very poorly and I am beginning to think that there may be a correlation between poor sleep and vomiting. It was not a question that I asked when we went to see the GI doctor in the afternoon.

When we go to see the GI doctor she really sees three people – the GI nurse/case manager, the dietician, and of course, the doctor. I keep forgetting that we have a GI nurse/case manager in addition to our regular Kaiser chronic conditions case manager which is in addition to our Kaiser Outside Providers case manager whom I never talk to because I’ve never had a problem with Kaiser and Stanford. But anyway, seeing the GI nurse/case manager reminded me that I have another source to go to when I run into problems finding syringes, NG tubes, etc. She understands exactly what I need. Our chronic conditions case manager did get syringes for us, but they were the leur lock tip syringes meant to work with needles and even if you take the needles off they don’t fit into the NG tube port.

The overall consensus was that Hana looked great. Her liver is still enlarged (I think that is what they are calling it) as it goes across her entire abdomen. But the cardiologists all feel her liver each time as well. Her weight gain has been great – about 10 grams a day. Her weigh yesterday was 7.87 kg. They don’t want to change anything. We talked about NG tubes versus G tubes. Problems with NG tubes long term (besides them irritating her and creating an oral aversion and not encouraging her to want to eat by mouth they are easy to pull out when she gets older). We also talked about vomiting, which they aren’t overly concerned about. No one seems to be concerned about vomiting if the cardiologists aren’t worried its her heart and she is still gaining weight like she should.

I forgot to ask some questions. There are more details but I’m so tired. I’m trying to get more exercise, even go to the gym and do some other “pamper myself” sorts of things. I had my first ever facial and pedicure in the last couple of weeks. I even played some guitar, playing “Blackbird” and trying to remember the chords to “I’ll
Follow The Sun”. Hana liked it. She is now nine-months old and finally likes hearing me play more than “Twinkle Twinkle, Little Star” on guitar.

Little Things

Posted on May 18, 2015 by katmeander

Things have been going well. Hana still vomits once a day. Today it was in the morning and it wasn’t too much. I guess what makes her vomiting different, perhaps, from other kids that may vomit a lot is the intensity of it. There is usually crying, choking, and a lot of dry heaving. It is not like you look over and say, “Oh, she vomited!” It is usually much more dramatic. Not always, but most of the time.

I feel like things are really starting to come together. This is not without a lot of help and not enough sleep. What makes things busy for us, busier than a family with one baby might otherwise be, are the little things. It is pumping breast milk, washing pumping supplies, washing bottles, rinsing feeding bags, cutting bandages into ovals (and hearts), measuring and mixing formula, washing syringes, ordering meds, picking up meds, drawing up meds, ordering adhesive remover and NG tubes and feeding bags and syringes and adhesives and formula. It’s sending messages to doctors, logging when you fed her and gave meds and when she vomited and tried to eat solids. It’s starting her tube feed at the right time, but not when she is rolling around or when its time to nap. Its talking to the case manager about supplies and samples and breast pumps and prescriptions and what messages have come from Stanford and what echocardiagrams I need to take to them next time I am there and how much Hana weighs this week and how many times she vomited and when. It is a lot moving parts. Not too many of them can slide, either. They all have to get done and by a certain time and not too early either!

This is why all the help has been fabulous, because keeping up with all the new stuff leaves little time for normal things like grocery shopping and making dinner and cleaning and paying bills and doing finances and taxes and laundry. But each day it gets better, mostly. Today was a good, low-key day. We took Poppy on two good walks and spent the rest of the day getting naps (Hana, not me) and attempting solid foods and bottles and giving tube feeds while she was upright and awake but still getting time to practice crawling on the floor. Tomorrow we go back to the GI doctor. I have a long list (in my head) of things to go over, like choices of medications, and weight gain and types and sizes of tubes and formula, volumes and rates of feeds and how much to fortify and when I should stop pumping breastmilk. There are more questions, I hope I can gather them all together before I forget!

Here are some photos from the last couple of days.

Genetic Testing

Posted on May 15, 2015 by katmeander

So, I’m beginning to settle into a reality that Hana will vomit once a day. Since I’ve done so, it feels easier to manage. I will carry towels and a change of clothes (for both me and Hana) everywhere. I started keeping towels and basins handy for the unforeseen vomit. Yesterday she vomited all over me (and herself) while we were out and about and today she vomited on the carpet in her room. I just hope she is too young to be self conscious of it but I’m beginning to think not. Oh, my sweet baby.

Today my big project was chasing down one of Hana’s meds – her Lasix. I reordered it on Tuesday but it was still not ready and I realized I accidentally requested it be mailed to our house. Fortunately, the pharmacy tech only gave me a little bit of attitude about the whole thing. I hate asking for favors, especially when I’m to blame but Hana was completely out of Lasix so it must be done. I’m still learning how to manage all of her meds and I’m still learning the Kaiser system so I shouldn’t be too hard on myself. Right?

The other problem we are running into is our supply of syringes. I’m kind of amazed how difficult this is for people to grasp. I need syringes that can be used to administer meds into Hana’s NG tube. That shouldn’t be anything too special. But I guess it is. Or, it is hard for people to imagine that I’m only drawing 0.7 to 2.4 mL of liquid at a time. A 10 mL syringe is neither necessary or helpful since it doesn’t allow me to measure precise enough. There are more types of syringes than I ever imagined and you pretty much need a prescription in order to purchase them, that’s including the ones that don’t even work with needles! Our current supply we stockpiled after use during Hana’s hospital stay at Stanford. But now the plungers are wearing out and the numbers are wearing off.

The big news today was when the nurse practitioner from Stanford left me a voice message to call her about some new test results. I got very nervous and very confused since I had no idea what results they could have possibly received. It was the genetic testing results that were sent out two months ago just before Hana was discharged from Stanford. They tested 60 genes that they know of to look for the gene mutation that causes dilated cardiomyopathy. They found nothing. This doesn’t rule out genes but it does rule out a reason to do genetic testing on me or Paul. It’s possible that there is a gene they don’t know about. We still need to get our hearts checked every five years. For some reason, the news relieved me. Maybe it’s because I can have more hope that her heart may recover which isn’t really a possibility if the root cause is genetic.

Cruising Altitude – Checkup At Stanford

Posted on May 13, 2015 by katmeander

Today Hana had her regularly scheduled checkup with her heart failure/transplant cardiologist at Lucile Packard (at Stanford). Her weight is up to 7.7 kg (almost 17 lbs) which is 170 grams more than last Tuesday. They were able to get her blood pressure (sometimes, most times, they aren’t able to get it) which was 108/55. They could her an intermittent gallup in her heart. They talked about her creatinine levels. They decided to adjust her Lasix so she is more dehydrated. She is more dehydrated than most normal babies, but too hydrated for a baby with a poor heart. But the overall assessment is that she looks great. They called this her new cruising altitude.

That means that we will watch the weight gain trajectory she is on. They will still be increasing some of her meds until they get to the levels that they want. We will watch the vomiting, since this is a normal occurrence for many tube fed babies, but there seems to be much hope that she will eventually take things by mouth and the tube can go. One vomit a day is not so bad, they say. She recovers well. They said we can all relax a bit more and just focus on enjoying our baby. The cardiologist said he didn’t even want to bring up “the transplant topic” on this visit.

They increased her Lasix from twice to three times a day. They doubled her Carvedilol again. They will wait until next time to increase her Enalapril. They want to do bloodwork again in a week to check how she is doing with the increase in Lasix. We will do another echo at Kaiser in a couple of weeks and we will go back to see them at Stanford in a month.

I am feeling much calmer and relaxed. They even said we could think about making travel plans, including a possible airplane flight. They said to just treat her like a normal baby. I can take her swimming again and they also said to go ahead and take her on the bus! I’ve been avoiding the bus because of small, enclosed spaces with lots of people, but it has kept us confined to walking distance from our house (and we only have one car which Paul takes to work).

I think we are really starting to get into a rhythm. We definitely need less and less help at home, most days. I could still use more sleep. Some of the conveniences that we pay for people offer to us are still making it manageable, but I definitely see a cruising altitude for all of us soon! We are so grateful for all of the support and help that we have received from so many people!

Plan For February 23rd

Posted on February 23, 2015 by katmeander

My dad left last night. I can’t imagine a more difficult goodbye. My mom is still here almost two more weeks. I don’t know what we would’ve done without them.

It took Hana a long time to get to sleep last night, it was midnight before we got to bed. She was still sleeping when I got up at 6:30 this morning. When she did awake around 8am, she was agitated and wanted to sit up. She was obviously still tired. It took a long time to get her to take a nap (which lasted less than an hour). I am so tired. We all are.

Hana seems like a teething, overtired, bored baby agitated by all the restrictions of tubes and wires attached to her. Today they will continue to wean her oxygen flow (she is on 2L). They will try weaning (I don’t know if they actually wean or just stop) her Heparin and start her on aspirin. They still need to get her diuretics right before weaning her down on the Milrinone (I suppose they need her electrolytes better balanced before messing with heart medication). She is getting 40mL of breastmilk an hour, which they will start fortifying tomorrow (for more calories without the volume). They talked about doing another echocardiogram. She has a standing order for Ativan is she can’t get settled. They are giving her Tylenol every six hours.

I heard the heart failure/transplant doctor say that 60-70% of dilated cardiomyopathy cases like Hana need a heart transplant within four months. Some percentage of those will need a heart transplant later in life.

February 20th Plan

Posted on February 20, 2015 by katmeander

Hana had a good night. Her heart rate is still pretty low but they are watching it carefully and so far everything else looks ok. When her heart rate is a little higher they will start her on beta blockers. For her breathing support, they will continue to wean her flow and hopefully get her on low flow (I think this is what it’s called) by tomorrow. They will wean her dopamine today too. The optimal plan, I suppose, is still to get her on oral medications and bring her home. There is still a slim enough chance that her heart could recover (although probably with decreased function), so we need to give that a try. But the next few days or week might tell us more if that is a possibility or if we need to get a Berlin heart for her or continue to keep her heart until a transplant heart becomes available.

Hana was quite active this morning! We sang and showed her toys. Maybe today we can even hold her.

Big Day Today

Posted on February 19, 2015 by katmeander

Today, after rounds maybe as late as early afternoon, they are planning to take the breathing tube out. They will do another CPAP trial before then just to make sure. This is big. If she can successfully come off the breathing tube, then we continue the course of lowering medications. If not, she may have to get a heart pump (Berlin Heart). After the last drama of this attempt we are all nervous (doctors don’t look nervous, at least).

Maybe I will get to hold her soon. I fear I am forgetting what it feels like to hold my baby.

It feels a bit awkward to mention this, but people have started asking – we have a fundraising page. My friend Alyx started it. When it went live last night I saw people had already started to donate and I cried for a long time. It’s not so much the money I see as it is the love and support.

http://www.gofundme.com/hanasheart

Here is Hana when we were at my parent’s house after Christmas: